Celebrating Round 100

In this blog post, I am going to provide an overview of my chronic health issues, and reflect on the ways that the Andy Cutler Chelation (ACC) protocol has radically changed my life for the better over the past two years. It is part of an ongoing series related to my chronic health issues. You can read an overview of those health issues, or read the other chelation-related posts too, if you’re interested. I’m using the milestone of Round 100 (or R100, in veteran shorthand) to reflect on where I was before starting ACC, how far I’ve come, and what I think may lay ahead.

The years before ACC

My health issues became crippling after the birth of my youngest son, nearly eleven years ago now. I had finished my Ph.D. while working full time, and a few year later, I got pregnant for the first time. The first pregnancy (in 2007) was wonderful, but the second one (in 2009) was absolutely brutal – I battled with post-partum depression. I struggled to stay healthy and positive; my little one was colicky, and he didn’t sleep through the night until he was ten months old.

I came home from the hospital after my c-section, and within a week I was on the phone with team members, helping to assess and cope with departures in my entire chain of command, and massive organizational restructuring. Combined with tons of pressure at work, I got to the point where I was really struggling to keep it together. The stress and sleep deprivation – combined with the demands of my job – took it’s toll.

My ob-gyn told me I needed to have more sex, whether I was in the mood for it or not. It was a decidedly unsympathetic and unhelpful perspective at that moment in time! Following that I went to my general practitioner, and after some thoughtful discussion about the trade-offs between managing hormones and managing the depression, she prescribed Prozac. I didn’t want to take it, but I wasn’t well. The anti-depressant enabled me to function, but feelings of true well-being eluded me. I gradually sought ways to continue to feel better.

It was during that time that I had seven mercury fillings removed and replaced with composite. That wave of dental work included a number of root canals and crowns. I was so tired, gaining weight, losing tons of hair, and really not feeling good about myself. So during that time I also started coloring my hair, as a way to make myself feel better. It was only much later that I learned how many toxins are in hair dye.

My quality of life wasn’t great, but my relationship was no longer in a precipitous decline, and our little one was finally sleeping through the night. Around that time (2011), I was recruited for a new job, and we made a decision to relocate to the Chicago area. In spite of a significant disruption (leaving a job after 10+ years, buying and selling a house, moving away from our family and friends), we hoped that our quality of life and my work/life balance would improve. While it did, my new role required routine travel to India, and as part of my preparation, an extensive number of vaccines was recommended. I also had more dental work done. In spite of all the changes, by 2013 I thought my life was coming to an end.

In my thirties, I had worked full time while completing my Ph.D.. I completed comprehensive exams for my Masters’ degree, wrote a 300 page dissertation, and successfully defended it. At the same time, I taught undergraduate classes, I played a variety of club sports, and I managed to have a social life. Some would have described me as a “powerhouse”.

But nearly ten years later in 2013, I could barely get up for work each day. I was always tired. I would go to bed with the kids around 8 pm and I slept hard. But I would wake up ten hours later still tired, and come home from work even more tired. It was constant, and persistent – I was exhausted and miserable from the moment I woke up each day. I went to work, ate dinner, and tried hard to find the energy to snuggle with the kids and read them bedtime stories. Many times I would wake up in the middle of the night fully clothed and with my contacts still in, having fallen asleep beside them.

On the weekends, I knew we needed to get our young kids out to the backyard or the park, but I just couldn’t find the energy reserves to help with my family in any way – I rarely participated. I was unable to help with the house or meals in any way – thank goodness my new job permitted my spouse to stay home with the kids. I would sleep ten or more hours a night, and still take 3-4 hour naps on the weekends. I had rarely been short-tempered, but I often found myself grumpy, impatient, or even angry. All the energy I had, I put into work. I felt incredible, constant pressure to succeed as the sole income provider for a family of four.

I knew that how I felt wasn’t normal for me, but I went to see so many healthcare professionals during that time, and I couldn’t get any of them to take me seriously. My spouse said I was “a shadow of my former self”, but over and over again, doctors dismissed my experience, and told me that it is normal to be tired as a working mom.

I’ve written at length about getting my Hashimoto’s diagnosis, so I’m not going to cover that again here. The short version is that it took me fifteen doctors over the course of five years to get that diagnosis, and that was only the beginning of my journey. It was only through my own perseverance – the conviction that what I was dealing with was not normal – that I finally started my long (and as yet unfinished) journey back to health.

Before our move, both our kids had been diagnosed with special needs – our oldest was diagnosed on the autism spectrum (PDD-NOS), and the little one with ADHD. In an effort to avoid medications, we made dietary changes. First we eliminated gluten, and with that my regular crippling headaches disappeared. I felt even better when we went dairy free. The behavioral changes in the kids were remarkable.

One day I was having lunch at a restaurant with friends from work, and I warned them that I might pass out – I suspected (and later confirmed) it was something I ate. Through a variety of experiences like that, I started to realize that I needed to explore dietary changes for myself as well. I learned about the Autoimmune Protocol (AIP) and food sensitivity testing, and it was after making radical changes in my eating habits that I finally started to feel like I might live to see my kids grow up.

At that time, The Root Cause by Isabella Wentz really helped me understand how I needed to systematically address the various potential root causes of my autoimmune condition. Using the book as a framework, I worked with a Functional Medicine Practitioner (FMP) for the first time, learned that I had a history of EBV (though I had never had mono), confirmed that I had chronic Lyme with multiple co-infections through DNA testing, and had (dangerous) provoked and unprovoked urine tests and hair tests done to confirm heavy metal poisoning. It was only through the incorrect treatment of the heavy metals (you can read more about that here) that I found my way to the ACC community on Facebook.

Two Years of ACC

Over several months, I had my crowns lifted and my remaining fillings safely removed by a specialized dentist. I started LDN (low-dose naltextrone) to manage the severe body aches from chronic Lyme. And I had the hair test done and read so that I knew what I was dealing with (lead, mercury, silver, and tired adrenals), and then I started ACC.

I started with three day “rounds” at first, using a chelator called DMSA which also helps chelate lead. I followed the protocol consistently every weekend, which involved taking the chelator(s) every three hours, including through the night on Friday, Saturday and Sunday. As I got into the routine, I consistently did four day rounds from Friday morning through Monday night. Although I was feeling better all the time, the fatigue from the treatment (both the sleep deprivation and the physical wear and tear) started to catch up with me. I eventually requested short-term disability from work so that I could both focus on my healing and continue to give it my all at work.

I gradually worked my way up in doses, as I’ve documented in my Chelation Chronicle blog posts. I arrived at my maximum dose in August 2019, and last week marked my 100th round of ACC. I’ve done nearly 120 rounds if you count the extra days from all the four-day rounds I did. Over the course of those two years, I think I took four weeks off in total – a week in May last year, and then another week right after that when my dad passed away. I took a two-week break after Round 99 as well – we were just starting to hear about COVID-19 in the US, and I didn’t want to be run down if I got sick. I knew I was out of gas, and resting was more important than hitting Round 100. All that said, now that R100 is done, I thought this would be a great moment to reflect and celebrate how far I’ve come over the the past two years.

Some Reflections

I’ve recently had bloodwork done for my Hashimotos, and my antibody levels are below the levels for an official diagnosis. I am still taking T3, but my dose is quite low, and my body is still producing thyroid hormones on it’s own.

During the first 18+ months of chelation, I was taking Adrenal Cortex (ACE) for adrenal support. Now I find that I’m better off without it, and my energy and moods are more even throughout the day; there are further signs that thyroid and adrenals are healing.

I was also taking a ton of GABA (close to 3000 mg a day) for anxiety. For me, that presented as a lot of emotional churn and obsessive thoughts – an inability to stop thinking about work or a specific interaction, for example. I now take 250 mg at bedtime, but I am largely calm, peaceful, and rarely stressed. I didn’t really understand how much that push, drive, anxiousness was shaping my life until it stopped.

Every few months I experience weird roving body pains that I have to assume are Lyme related. A month ago I had one in my upper right arm, and it was so painful that I struggled to use my arm at all. A few days later, it moved under my right scapula (which made it hurt to breathe), and then to my lower left back. And then it was just … gone. Those episodes are brutal but infrequent, and they usually pass within a week or two.

While I still follow basic AIP / Paleo principles, under the guidance of a new Functional Medicine Practitioner (FMP), I’ve been gradually re-introducing foods to get some more variety in my diet. Many items that were impossible a few years ago are a regular part of my diet now, including eggs, bell peppers, tomatoes, white potatoes, and many different kinds of nuts. I am lucky that I don’t have the dreaded ‘thiol sensitivity’ that is common is many people who chelate. However, I do still have some random lingering food sensitivities, including cane sugar, carrots, sage, and thyme.

A couple of years ago I started to get weird rashes on my body. They first appeared on my neck after eating lobster and shrimp, and later showed up after too much exposure to the sun. Later, I had a horrible rash after eating sauerkraut – apparently fermented foods can be a trigger for many people. As a result of those experiences, I did more research and learned about histamine-containing and histamine-inducing foods, and I started excluding those from my diet as well. Those were some of the lowest moments of the past two years for me – my food was already so restricted, and not being able to enjoy time in the sunshine at all was incredibly discouraging.

I still have some issues with histamine sensitivity. I rarely get rashes any more, but I do get inflamed if I eat the wrong foods. However, regular exercise (just walking, at the moment) seems to help that. Although I haven’t tried shellfish or sauerkraut yet, I’m growing increasingly confident that I’ll be able to have them again when my body is not working so hard to excrete toxins.

One really discouraging thing with ACC has been the weight gain. I know my body is working hard to expel the metals, but it has been so frustrating to gain so much weight (nearly 45 pounds). In an effort to address my elevated A1C (blood sugar, higher risk of diabetes), I had been on a ketogenic diet and intermittent fasting (meals at 10 am and 6 pm). Once I started ACC, I had to stop because I was too tired, otherwise. I’ve just re-started moderate keto (20-50 grams of carbs a day) and intermittent fasting again. While I’m not losing weight as easily as I did before chelation, my weight is largely stable and my blood sugar levels feel more consistent than they were.

I’m slowly feeling the urge to exercise again. Right now that means getting out for a walk and some fresh air as often as possible – sometimes just 25 minutes, but as many as 45 minutes on a good day. Sometimes I stretch after sitting in the infrared sauna. I hope those activities will gradually translate into more rigorous exercise and weight loss, but that’s not the priority at the moment – I just feel less sluggish and happier if I move a little bit. I’m sure that my increased intake of B vitamins has helped with that, too.

My energy levels have changed so much. Even when I’m chelating, I have time, energy, and patience for my kids and for my work. I don’t nap any more, and every once in awhile I can stay up late reading and still function the next day. The improved energy means all kinds of other things:

• I was always a bookworm, but I hadn’t read consistently in years while I was at my sickest. At the end of last year, Apple informed me that I had read 50+ books (mostly for pleasure), and that’s not counting paper books and books I read on Kindle. I’m reading even more now than I was a few months ago.
• I am craving ways to be creative again. Occasionally that means cooking and baking, but I’ve also taken metalsmithing classes, watercolor and COPIC marker lessons, and I’ve immersed myself in learning to make handmade cards. I’ve also found a group of ladies nearby who do beadwork, and I often meet them on Fridays to work on projects together. Each new skill has brought me joy and new ways to reconnect with important people in my life.
• Although I’m still relatively introverted, I have also started to reach out and reconnect with friends I’ve lost touch with over the years. Many of those relationships were so seriously neglected they will never recover. But I’ve also had some warm, lovely, and occasionally unexpected moments with friends from my past.
• I’m listening to music all the time again. I went for years without listening to music at all – not even the radio in my car on the way into the office. I was just so tired and overwhelmed I didn’t have the bandwidth. Now I’m listening to old music and new, creating playlists, and I always seem to want music on when I’m doing something creative.
• I am able to keep up with the demands of my job, but continue to develop professionally outside of work as well. I am kindling new professional relationships, expanding my network, and continuing to learn about my field in a way that I hadn’t done in years.

In the midst of all this I was, unbelievably, elected partner at the consulting firm where I work. Due to that success, I’m managing an increasingly large team – currently around 150 people. So, in spite of all the exhaustion and heartache I’ve experienced personally, I’ve still continued to advance my career in ways that make me proud.

What Lies Ahead

First of all, I took some time in the past week or two to reflect and celebrate. This blog post was an important part of that. Last night I had my first alcohol in two years – a glass of champagne. It was relaxing and delicious!

In hindsight, the hundred rounds went pretty quickly, and I feel so much better than I did when I started. I am glad that I made a big push and that I’m experiencing the benefits of that. But, one of the things I have noticed is that I’m not recovering from rounds as easily as I did in the past. On Thursday I used to look forward to starting a round, but this week I just felt like it wasn’t the right decision. I think my body is just tired – and rightfully so; what I’ve accomplished so far is non-trivial. But, I have decided I am going to start chelating every other weekend now to give my body a break. And once a month I’ll do DMSA as well. Once I’ve recovered a little bit, that may give me the flexibility to do longer rounds – five, six, even seven days. But not right now. Today is Friday, and it was so wonderful to just sleep through the night. I stayed up ‘late’ (for me); I fell asleep at 10 pm and woke at 7 am without an alarm. I feel rested deep down, and ready to go for a walk today.

One of the things that I’ve been reflecting on is how central chelation has been to my healing journey in these past few years. I have done little to no exercise during that time, because I just haven’t had the energy. While taking that two week break a few weeks ago, I realized that it wasn’t just laziness or lack of desire, but deep fatigue. Rather than beating myself up, I needed to acknowledge that and take better care of myself, instead.

I really haven’t done anything else health-wise except regular sleep, consistently healthy food choices, and chelation. All of which are foundational, of course, but not sufficient. When I don’t chelate as often I have more energy for exercise, and I think I’m at the point in my healing process where that is an important trade-off.

At the beginning of ACC, I had this idea in my head that I would start Lyme and/or parasite treatment when I reached max dose, or at the end of one hundred rounds. But now that I’m here, I honestly I just don’t feel like rocking the boat. I am doing well – not amazing, but so much better than I have in years. I just don’t want to disrupt that right now.

I want to enjoy the benefits of all the work that I’ve put in, and take some time to enjoy my life a little. It feels like a walk in the Spring sunshine after a long Chicago winter. I want to savor it.

I’m sure there are many other things that I could report. But those feel like the most compelling ones at the moment. If you have questions, please post in the comments and I’ll do my best to answer them.